Thursday, August 17, 2006


You may be wondering - why has Nicole not posted anything about Symlin lately?

The answer. I am no longer taking Symlin.

About two weeks ago now, I had five extremely frustrating days of bloodsugars. I did nothing but bounce. I tested 67 times in those five days - with only 6, yes 6 - in-range bloodsugars. I'd start the day at 240 or 190 or 360- give some Symlin, Insulin, have breakfast, an hour later I'd be 26 or 38 or (just once) 109. An hour after that, I'd be on the climb again - 181, 204. I was skipping lunch because I felt so crappy. I'd run in the two or three hundreds ALL afternoon and then swoop down before dinner - I'd have to get my bloodsugar up before giving meds and eating - and then I'd deal with more bouncing after dinner. My life was a series of low blood sugars and huge rebounds. The days surrounding those five frustrating days weren't much better - the highs and lows were much more frequent than I'm used to and the in-range sugars were next to non-existent.

I called the doctor. Many times. I actually cried on two of those phone calls. Stupid, persistent, angry, frustrated tears. I couldn't understand how adding one thing to the mix could throw me off so damned much. I told the doctor I didn't really think it was working for me. Sure, I was losing weight - a total of 16 pounds, to be exact - but I was a mess. I was tired and cranky and I felt gross all the time.

We decided that, given all the issues the Symlin unearthed - for example, sometimes completely inappropriate basal rates - maybe it would be better if we got the rest of the variables in order and then reexamine the Symlin sometime down the line.

So - my bloodsugars are pretty much getting back to normal. I've kept the weight off too, which is good.

In the past two days, the sugars have looked like this:

8am - 117
10am - 168
11am - 121
12noon - 78
2pm - 309 (drastic lunch miscalculation)
4pm - 161
6pm - 114
8pm - 139
11pm - 75

8am - 159
10am - 123
12noon - 98
1 pm - 63
1:15pm - 89
2pm - 220
4pm - 139
6pm - 118
8pm - 141
12midnight - 93

This AM I was 172 - but I retested and got a 161...

A few more adjustments and we just might be ready to Syml-in again... I'll keep you posted.

All of this got me thinking, though, about what an incredibly inexact science controlling this disease really is. Sometimes, there are perfectly reasonable explanations for out of range bloodsugars - miscalculations, overeating, too much exercise... But other times - and it feels like too often - the disease has a mind of its own and I am a passenger aboard a boat that's caught in the riptide - I am utterly helpless to the throws of the waves. How can it be that I have two identical days - insulin, food, stress-wise and still end up with bloodsugars on opposite sides of the spectrum? How can it be that I read labels and count my carbs to the morsel - and still I sometimes end up with wonky after-meal sugars? I mean, if these things happened with consistency, I could figure it all out - but it's so random and nonsensical - it's like I'm trying to read Chinese characters.

I guess, like the rest of us, I'll keep doing the best I can. And hope it's good enough.


Kevin said...

I'm sorry to hear that you had such a rough time with the symlin, but also glad that it brought about some weight loss for you.

And I hear you loud and clear on the variability bit. I basically eat the same breakfast and lunch 5-6 times/week and even then there's tons of variation in my readings. It almost seems like "what's the point?".

Very frustrating indeed.

Lyrehca said...

Very much looking forward to your next Symlin update. While the crazy numbers don't sound fun at all, the 16-pound weight loss sounds awesome. Congrats.

Allison said...

I had the damndest time figuring out my titration when I first started. My CDE kept telling me to lower my insulin, but in reality all I need to do is square bolus for it. I've forgotten to square bolus twice this week, which is a huge frustration. I don't take Symlin all the often (once or twice a day, at most, often time skipping days if I just don't have time). I've never taken it long enough to find out if I could lose weight from it, because Symlin just seemed to make things more complicated. I wish there was a Symlin/Insulin/CGM pump, because then you would have the best idea of what was going on when. Until then, it's mostly just trial and error.

art-sweet said...

I'm sorry it was so frustrating.

This disease is so frustrating.

I'm glad that it helped you lose weight though - that's awesome!

Nicole P said...

Kevin - The "what's the point" feeling is just so infuriating!

Allison - Really, my titration of the Symlin wasn't a problem at all. Anything over 5 units sent my bloodsugars spinning downward - uncontrolled, so we never went back after one try with an increased dose.

My doc told me that unless I took it consistently, it would only cause wide fluctuations, because your body needs a constant flow of the drug to maintain a consistent insulin-needs profile.

You're right about the pump thing - wouldn't that be cool?

Lyrehca - Congrats! So thrilled for you. Symlin does seem to do the trick for me in terms of weight loss. Mainly because it totally destroys my appetite.

Art Sweet - Damned now if I'll be able to keep it off!

MileMasterSarah said...

I myself am on symlin and I have been for 8 months now. I have STRUGGLED STRUGGLE STRUGGLED with RIDICULOUS lows and added decreased hypoglycemic awareness with symlin. I went from testing 10 times a day to 19 times a day. Ive lost seven lbs, but lots them when I was training for a half marathon, so Im not convinced it was the symlin. My a1c's have gone from 6.9, to 6.2, to 7.2 over the course of these 8 months. I am STILL on symlin, and slowly over the past month, with some limits put on my symlin use (we are not an evening snack accessory) and extensive basal testing along with sticking to my guns with CDEs trying to adjust my bolus ratios down, Im having much less lows...much less meaning not more than 2 per day and usually not under 50 when I catch them....This is a learning curve, and I hope I can figure it out. I did skip one day on symlin and had beautiful blood sugars....I myself have considered quitting, the lows are downright frightening. If you start again, Id be so interested in seeing how things work out!

brenda said...

I've been on symlin for a couple weeks and I have not noticed any upset in my stomach and I never ate a lot so not much thier either. but I do get light headed all the time is this normal?